I woke up this particular morning feeling grateful. Grateful that Noah survived the surgery. Grateful for his donor, and grateful that the first twenty four hours were behind us. They took the ventilator tube out,Noah was doing well breathing on his own, and he was now off a number of medications. The doctors were very positive about the direction he was headed. Because he was doing so well I made the difficult decision of going home and getting some rest. Every time his transplant doctor came in she was almost giddy about his progress. Jonah was coming home this day from his vacation with friends and I wanted to be there for him as well. I knew Noah was in good hands with Jason and if anything arose we had an amazing team of people who could get me back to the hospital as soon as possible.. It was hard to not be right there with him every moment but I knew I was doing the best thing for us all. The last thing we needed was for me to end up in the hospital as well. I face timed Jason and Noah often. By the end of this day Noah was talking. It was a tired, shaky, out of breath voice but it was so great to hear him talk. He also sat up in a chair. Thirty hours after a transplant and he’s out of bed sitting in a chair. This was incredible to me.
Noah continued to do well each day surpassing the doctors expectations. He was up and walking, eating , and meeting each days goals. I was preparing myself for a setback but it never came. God was gracious to us and because of this gracious gift it allowed me the rest my body so desperately needed. Day five he was moved out of ICU into a regular room. Once in a regular room they started preparing us for what life at home with a transplant would look like. We all learned about the many medications he would be on, what they all did, and how time sensitive they were. We learned about the importance of a low sodium heart healthy diet and foods he would no longer be able to have. Then we learned about the many weekly appointments for labs, tests, and heart caths/biopsy he would have in the first year after transplant.. It was a lot to take in for all of us. Most of this we had heard about but until its your turn its really difficult to understand the magnitude of it all.
Noah was discharged on Day 8. We felt elated to be bringing him home but also nervous. There is a bit of comfort when he is being monitored by doctors and staff. It reminded us of the first time we brought him home after his birth. We brought him home and felt so ill equipped for the job but you figure it out and after some time you feel more and more confident. We are figuring things out now and feel like we are in more of a rhythm. Medications are going smoothly and we are learning how to make heart healthy meals.
When we arrived home from the hospital we were greeted by friends, family, community, and even fire men who lined our street. They were holding signs and cheering. I can’t even describe to you the overwhelming feeling of love and care I felt. In one of the hardest times of our lives, we have seen such beauty and felt so much love from God’s people. You all know how to love well its unbelievable to me sometimes. God continues to use you to show up for us in the most tender ways. The cross we have been asked to bear feels lighter because of you.
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